Born and raised in Oshkosh, Wisconsin, and following enlistment in 1949, I advanced to the top of the enlisted ranks as a Master Chief Cryptologic Technician and retired the last day of December 1976, shortly after 27 years in the United States Navy, then totally retired in 1995 following 18 years civilian employment in management. Following military service and already in a management position, I studied to an Associate in Arts degree (summa cum laude) to satisfy myself I could do so. My wife Ann, from Canton, Ohio, and I have been married since April 6, 1954 and have two bookend daughters with two sons in between, five granddaughters, one grandson, two great-grandsons, and three great-granddaughters. In about 7 months will have to add yet another to one or the other!

Since 1996 I have been an active participant in the Wichita, Kansas Chapter, Us TOO Intl., Inc., Prostate Cancer Education and Support Network, and was instrumental in its incorporation in the State of Kansas as a 501(c)(3) Not-for-Profit Charitable Corporation as a chapter of the Us TOO Intl., Inc. Prostate Cancer Education and Support Network, and development of a chapter website www.ustoowichita.org. I served near continuously on the Board of Directors as Program Director, Secretary, Treasurer, Corporation Representative, and Website Manager, served a stint as Coordinating Committee Chairman, Secretary, and Treasurer, and currently, in view of health issues, had to back down a bit but continue to serve on the Board of Directors as Secretary, assistant Treasurer, Corporation Representative, and Website Manager.

I was diagnosed with Prostate Cancer in November 1992 Gleason Score 3+4/7, PSA 6.3ng/ml, with subsequent treatment over the years of initially radical prostatectomy followed by external beam radiation as a safeguard, 3 years apparent remission with PSA <0.1ng/ml, then return of slow rise PSA to 0.81ng/ml. After 5 ½ years Androgen Deprivation Therapy (ADT1/2) from 1996 to 2001with PSA <0.01ng/ml, began 2 years off ADT drugs (Intermittent Androgen Deprivation – IAD). After another return of slow rise PSA to 0.13ng/ml by 2003, I returned to ADT but this time ADT3 (LHRH agonist Lupron, antiandrogen bicalutamide/Casodex, and 5Alpha Reductase (5AR) inhibitor dutasteride/Avodart). With November 2003 to November 2004 continuous <0.01ng/ml PSA, went on second off-phase from ADT but with continued Avodart.

In September 2010, after 14 years on/off/on/off androgen deprivation therapy, I completed my second intermittent androgen deprivation (IAD) that had lasted two months short of 6 years while “maintaining” with dutasteride/Avodart over that entire period. My PSA had finally reached the 2.0ng/ml plateau I had decided would be the appropriate time to return to adding back bicalutamide (generic of Casodex) and Lupron to my continuing Avodart. With this return to ADT3 my PSA fluctuated down to as low as 1.67ng/ml by May 2011. However, despite this triple hormonal blockade, it then gradually began elevating and with the PSA level reaching 2.55ng/ml by September 2, 2011, I had already stopped the bicalutamide and now began abiraterone acetate/Zytiga 1000mg upon rising each morning (requires empty stomach) accompanied by Prednisone 5mg twice daily along with continuing Lupron and Avodart. In three weeks PSA dropped to 1.61ng/ml. At two months, PSA continued drop to 1.28ng/ml. On December 22nd, at a week short of four months, my PSA continued its drop to 0.72ng/ml. Testosterone had dropped to <3.0ng/dl (as we would expect with Zytiga effectiveness). All other CBC/CMP lab results at this time within normal ranges. CT imaging with and without contrast unable to identify location of any tumor activity though did determine mild osteopenia. A Circulating Tumor Cell (CTC) test determined zero cancer cells circulating in the blood stream. An earlier check of my Prolactin level found it too high at 7.4ng/ml, so took Dostinex/cabergoline, one 0.25mg tablet Monday, Wednesday, and Friday for a month and level dropped to 0.4ng/ml. I am continuing this medication to keep the Prolactin level down. February 9th, 2012 PSA result indicated a slight elevation to 0.75ng/ml, so had been hoping this would not be a continuing trend. Testosterone remained <3.0ng/dl. Continued Zytiga, Prednisone, Lupron and Avodart. Lab results 3/26/12: PSA continues elevation currently 0.9ng/ml. Testosterone remains <3.0ng/dl. Zytiga continues but appears to be failing effectiveness. Also continuing Avodart. Switching from the agonist Lupron to the antagonist degarelix/Firmagon commencing 4/5/12 and bringing on nilutamide/Nilandron 150mg daily to see if any effect on PSA. Cutting down on food sources with sugar since most all cancers thrive on sugar passing through the system, especially candy bars and ice cream and cookies, that has been a bad habit of mine. I am currently scheduled to continue abiraterone/Zytiga accompanied by Prednisone until it is certain that it is no longer effective. If Zytiga stopped, will taper off Prednisone to avoid any side effects that can occur when stopped too rapidly.

Well, as of PSA test 4/23/12 – almost 3 weeks into degarelix/Firmagon, nilutamide/Nilandron, and continued dutasteride/avodart and having stopped abiraterone acetate/Zytiga and weaning of Prednisone, PSA took another very slight turn-around dropping form 0.90ng/ml to 0.87ng/ml. I’ll take it! Should be off Prednisone at the end of next week. So, time will tell! If my PSA does another turn-around upward, may just give Zytiga/Prednisone another add-back to see if it makes any difference since I still have a supply of both left.

PSA did another turn-around and began elevating so went back to Lupron, continued Avodart, stopped Firmagon and nilutamide, and returned to Zytiga and Prednisone when PSA hit 1.17ng/ml in June about a month and a half after going off these two medications. I learned from a Medical Oncologist in Texas that patients should not stop Zytiga when experiencing a PSA elevation after earlier drop, since this can occur but then the Zytiga again kicks back in.

A month later (July 2012) PSA dropped to 1.12ng/ml; only a 0.05ng/ml drop, but at least no longer elevating and somewhat turning back down.

With my lab work on 8/13/12, PSA had dropped to 0.90ng/ml! I also had my PAP, CGA, CEA, and NSE levels checked just to make sure they were within range. All were in the lower part of normal range except CGA which was slightly elevated, but since I also am prescribed the proton-pump inhibitor Omniprazole/Prilosec, it is known that these inhibitors up-regulate CGA levels and is likely the cause of slight elevation over supposed norm. 25-hydroxy Vitamin D level also within preferred range.

Another month gone by and on 9/10/12 PSA dropped once again to 0.74ng/ml.

Hallelujah! 10/22/12 PSA dropped to 0.55ng/ml! That is lowest yet since my return to Zytiga this past June/4 months ago when PSA was 1.17ng/ml. I am a firm believer that Zytiga – and likely Xtandi – should be prescribed as soon as the usual androgen deprivation medications are showing failure (LHRH agonist/antagonist, antiandrogen/5AR inhibitor combination). I believe both would be much more effective at that stage when it appears the cancer is becoming hormone refractory (HRPC) than waiting for metastasis to appear or following the failure of the toxic medications involved in chemotherapy.

Lab result for 12/14/12 showed PSA steady at 0.55ng/ml. Vitamin D level down to 39.7ng/ml despite daily intake of 5600 IU. Drop likely a side effect of Zytiga. Increasing daily intake to 7600 IU to check again next month.

PSA CONTINUES DROP...0.521ng/ml as of 3/4/13! Thus, despite there having been one period of PSA turning around and elevating, with return to Zytiga two months later there has been continuous drop in PSA level.

YAHOO!....dropped even more to 0.407ng/ml as of 4/29/13!I

STILL DROPPING: PSA 0.319ng/ml as of 7/1/13! I am now 22 months with Zytiga my primary medication backed up by Lupron and Avodart. Also on 7/1/13, 25-hydroxy Vitamin D level finally up in range I want it at 69.2ng/ml.

OOPS…ended up in ICU 7/17/13 with heavy rectal bleeding.
Because of on warfarin, I was first administered oral Vitamin K
followed by an injection of the same vitamin to counter the thin blood. Experienced constant bleeding for 32 hours before Vitamin K countered warfarin and blood finally coagulated. While still in ICU 7/18, had colonoscopy in late afternoon but with blood having coagulated about an hour before (and system “cleaned out” with the yuk drink the night before) unable to determine cause. Doctor came in 7/19 to report he contacted three colleagues and all said the diverticulosis I have had for years likely erupted then bled so severely because of the thin blood from warfarin and just wouldn’t coagulate; he said this happens frequently to men over 70 years of age. Released 7/19 afternoon. Became anemic from blood loss: early August 2013 red blood cell count 4.20 when bottom of range is 4.69; hemoglobin/HgB 13.0 when bottom of range is 14.1; and hematocrit/HcT 38% when bottom of range is 43.5. Taking iron tablet twice a day and eating more greens and red meat (though red meat otherwise a no-no for PC patients) to get these counts back up. Doctor said it could take 3 to 4 months to do so. With the fatigue and energy loss from the blood loss, on top of the fatigue and energy loss already experienced from Zytiga (testosterone level is <3.0ng/dl because that is as low as the equipment reads), I tire very fast and even walking a short distance takes its toll. Otherwise feel okay.

NEW PSA RESULT 9/3/13: Slight elevation (0.032ng/ml)
higher at 0.351ng/ml than the 0.319 ng/ml level back on 7/1/13. I’m not concerned with this slight turn around since there are too many factors that can skew a PSA result by such an insignificant movement. Two years so far with excellent reaction to Zytiga.

More Good News, 11/8/13 PSA result 0.352ng/ml, so 1/1000th
increase – I can “live” with that!

Oops again, Sneaky Pete is
sneaking up on me again…PSA 1/6/2014 0.384ng/ml, so up 0.032ng/ml. Seems insignificant, but this has been a continuing, though very slow, elevating since earlier nadir of 0.319ng/ml on 7/1/13; an overall 0.065 over 6 months. I can continue to be happy if it continues no more rapid a rise than this since even in 10 years it would only get up to 1.68ng/ml…wouldn't that be nice?

Yippee…PSA 3/7/2014 dropped down to 0.379ng/ml. I’ll take any drop no matter if only .005!

OOPS…6/30/2014 PSA sneaking up to current 0.531ng/ml. That’s a pretty significant rise, so, we shall see and hope it slows down by October.

Well, here it is 9/29/2014 and my PSA has dropped just a bit to 0.527ng/ml, so, importantly, it is at least remaining stable and you can bet I’m thrilled.

1/27/15 Bone Scan this date hi-lited my left knee (because of recent fracture/healing of that kneecap/patella), left hip (known degeneration with age), lower lumbar spine (known degeneration with age), and a small spot between 9th and 10th left ribs (looking more like from recent injury so for now expect from the hard fall to that left knee and left side that may have jarred the rib cage as well; no pain evident so will just compare in future imaging). Thus, still no evidence of absolute metastases.

Another OOPS....2/2/2015....slight PSA rise of 0.023ng/ml over last four months to 0.55ng/ml. Considering that I have been successful for the past 41 months since adding Zytiga/abiraterone acetate to my earlier failing Lupron and Avodart, I continue pleased that my PSA level remains low and reasonably stable.

PSA 0.66ng/ml 6/15/2015 so, still on a slow but now appearing somewhat steady elevating. It has now been 45 months and thankfully still counting since adding Zytiga with continuing Lupron and Avodart in September 2011 when PSA had reached 2.55ng/ml while on Lupron, bicalutamide (generic of Casodex), and Avodart since September 2010 following a 70 months IAD with only Avodart and returning to adding back Lupron and bicalutamide when my PSA had reached 2.0ng/ml.

WELL, PSA isn’t slowing down. Over past four months has elevated another 0.22ng/ml to 0.868ng/ml as of 10/19/15. That may appear low to most, but not after triple androgen/hormonal blockade eventually failed necessitating the addition of Zytiga/abiraterone to my treatment protocol. At that time, PSA had elevated to 2.55ng/ml despite Lupron, Casodex, and Avodart, and a brief try of Firmagon/degarelix to see if that would help. With stopping Casodex and adding Zytiga to Lupron and Avodart PSA eventually dropped to a nadir 0.31ng/ml, but has since been slowly but steadily elevating. If this elevation continues at its current rate, it would appear I am going to see over 1.0ng/ml in January 2016. When it closes in on 2.0ng/ml I will have to have made a decision where I want to go next. I may have to seriously consider a trip to Mayo Clinic in Rochester, Minnesota for C-11 Choline PET/CT imaging unless by then C-11 Sodium Acetate PET/CT has been approved by the FDA; that being the case, I would only have to drive a few hours up to the Kansas University Medical Center where this imaging has been in study. Unable to currently make use of that location since the out-of-pocket cost for the sodium acetate agent is $2500.00 and cannot afford that cost at this time. With the hopeful approval of C-11 Sodium Acetate by the FDA in near time, my Medicare and military Tricare-for-Life would then cover everything. Fortunately, it has now been 49 months (4 years, 1 month!) success with Zytiga, Lupron, and Avodart holding my prostate cancer in very slow rising control. Hope “Father Time” continues to keep his clock ticking slowly to keep my cancer reined in, and just maybe he is also able to “turn back” my clock. :D

PSA 12/7/15 0.895ng/ml, so, still on the rise. Started Metformin to see if it will have any effect. Found my Vitamin B12 level, important to be aware when beginning Metformin, is deficient at only 189pg/ml as well as Vitamin D level having dropped to 48.7ng/ml despite intake of 7600 IU daily. Did some research and know Metformin has an effect on Vitamin B12 level, but has no effect on Vitamin D level. Possibly the blood result for Vitamin D was an error so will have the level checked again. Beginning Vitamin B12 supplement 1500mcg daily to hopefully eventually elevate preferably over 300pg/ml. Also going to up Vitamin D3 supplement to 9600 IU daily to get level up over at least 65ng/ml. Having an MRI next week to check lumbar spine because of pain being experienced in left thigh and calf suspected to emanate from the spine, then whole body 18F NAF Sodium Fluoride PET/CT imaging December 30th to determine if there is any presence of metastases.

12/16/15 - MRI of spinal lumbar area because of significant pain running down through buttocks to upper thighs determined bulge between L4 and L5 vertebrae, stenosis narrowing due to degeneration, cartilage between joints wearing down, and thickening of the ligamentum flavum (a protective tissue around the spine). Epidural cortisone injection scheduled for 1/20/16 to hopefully eliminate current significant pain now experienced.

12/28/16 – Whole body imaging with 18F NAF (Sodium Fluoride) PET/CT unable to identify any area of metastasis, though same areas of MRI results were evident as well as identifying absence of prostate gland, left hip having been injected with cortisone, left knee having healed from earlier fall that caused a crack in the knee cap (patellla), and joint degeneration other knee, hip, and in several area as expected from aging. Obviously pleased that wherever cancer cells are still lurking “somewhere” (because of slowly elevating though low PSA level), they continue to be too insignificant in development to be identified by MRI or 18F NAF PET/CT imaging. Still, somewhat disconcerting to have PSA elevating, despite at a very slow pace, yet imaging unable to identify the “where” causing the elevating while on what has been an over four-years protocol of successful Zytiga/abiraterone acetate, LHRH agonist Lupron, and 5Alpha Reductase inhibitor Avodart.

1/18/2016 PSA 0.902ng/ml -Well, at least appears to have “slowed way down” over the past seven weeks since this is only a 0.07ng/ml rise. Thinking about quitting ADT meds and moving to high dose testosterone administration if my Medical Oncologist is willing to experiment or I can find a local physician with expertise in high dose testosterone replacement therapy. If that fails to knock PSA down and rather my PSA goes wild, then it may be time to get hit with chemotherapy. Strange that CT, bone, MRI, or 18f Sodium Fluoride PET/CT imaging are all unable to identify continued cancer cell presence, as well as the Circulating Tumor Cell blood test unable to identify any tumor cells in the bloodstream.

2/8/2016 PSA 0.964ng/ml so the elevation, though slow, continues.

5/23/2016 PSA 0.941ng/ml. This is a nice change in direction no matter only dropping by 0.023ng/ml from the February reading!

8/23/2016 PSA 0.88ng/ml. This is a wonderful “drop” in PSA level, particularly having experienced two mini-strokes that put me in the hospital twice and rehab the 2nd time, along with a questioned loss of 40 lbs. from 220 to 180 and 5” off my waist in the last couple months that had me worried my prostate cancer may be acting up. An addition of Metformin w/Vitamin B12 to continued Zytiga, Dexamethasone, Lupron, and Avodart may have done the trick.

10/3/2016 PSA 0.507ng/ml! In 2010 after 5 years on intermittent androgen deprivation (IAD) with only Avodart/dutasteride one 0.5mg capsule daily maintaining a PSA of <0.01ng/ml, my PSA began a slow rise to an eventual 2.55ng/ml despite a return to adding Lupron and a short period of Casodex one 50mg tablet daily to the continuing Avodart. With this continuing rise (I had earlier dropped the Casodex with no change in PSA rise) on 9/2/2011 added Zytiga/abiraterone acetate four 250mg tablets (1000mg) accompanied by Prednisone one 5mg tablet twice a day to the continuing Lupron and Avodart. The following explains the effectiveness of the addition of Zytiga: PSA dropped to a low nadir of 0.31ng/ml by 7/1/13, then have had continuing reasonable PSA control despite a very slow but steady rise to 0.964ng/ml by 2/1/2016. I had studied papers regarding Metformin appearing to have success in slowing cancer cell activity and sometimes reversing PSA rise, so began this medication in March of this year with one 500mg ER (extended relief) tablet in the morning and one at bedtime accompanied by one 1500mcg Vitamin B12 tablet daily having learned that Metformin can deplete Vitamin B12 in the system. “Success!” PSA level began receding and by 10/3/2016 had dropped to 0.507ng/ml. Obviously at this moment I am “ecstatic!”

11/15/16 PSA level now on slow rise again. Currently 0.649ng/ml. Certainly no worries yet and not sure why rising after having dropped from 0.964ng/ml over each PSA check to 0.50ng/ml.

12/30/16 PSA 0.78ng/ml so still on rise. Obviously will follow trend of elevation.

2/13/17 PSA 0.901ng/ml Oops, still rising! Over past year since adding Metformin to my medications my PSA showed a nice drop, but then a turn-around and coming back up. 2/8/160.964, 5/23/160.941, 8/23/160.88, 10/3/160.507, then the turn-around, 11/15/160.649,12/30/160.78, and here we are on 2/13/170.901, almost back to the year ago level. If Metformin brought about the earlier drop, apparently its effect is not long-lasting. May have to consider a move from my current Androgen Deprivation Therapy of the LHRH agonist Lupron/leuprolide, Avodart/dutasteride, and Zytiga/abiraterone attack primarily on testosterone/dihydrotestosterone production to replacing Zytiga with Xtandi/enzalutamide to see if blocking the transit path of testosterone via androgen receptors/AR on cancer cells will have an improved effect.

4/10/17 PSA still on slow rise to 0.949ng/ml. Stopped Metformin since it appears to have lost its earlier effect. A PSA of 2.0ng/ml is the limit at which I have set my personal level as the point where my Medical Oncologist and I had to have determined a reasonable change in Androgen Deprivation medications that might, hopefully, change direction of my current PSA rise.

5/3/17 Medical Oncologist and I decided may as well stop Zytiga/abiraterone acetate following 5 years 8 months successful effectiveness since PSA continues slow but continuing elevation. Did so on 5/2/17 and began XTANDI/enzalutamide this date. Frankly, a relief since with Xtandi the patient can determine the time each day he will consume this medication and not have to be concerned about the problem with Zytiga to have to not have any food or other intake for two hours prior to consuming the Zytiga, and having to wait another hour before being able to then have food, drink of choice, and other medications prescribed, as well as not having to include prednisone twice a day (or in my case I had moved to dexamethasone once a day). Since I must also take warfarin daily. an anticoagulant used to decrease the formation of blood clots by blocking certain clotting factors, and Xtandi (as does Zytiga) has a counter effect on warfarin, I now take Xtandi every evening at 8:00 P.M. daily so that by the time I take the warfarin at 8:00 A.M. the next morning the effect of Xtandi will have somewhat diminished in order to enable the warfarin 12 hours later to be more effective over the next 12 hours; an unfortunate game we have to play when prescribed medications. I must take warfarin daily indefinitely having experienced in the past on two different occasions blood clots having caused me pulmonary embolism (blood clots) to an artery in both lungs simultaneously. For warfarin to be effective, all green, leafy vegetables have to be avoided. Green tea should be avoided. And I only learned today when checking products to be avoided that Coenzyme COQ-10 is to be avoided when warfarin is prescribed (http://www.mayoclinic.org/drugs-supplements/coenzyme-q10/interactions/hrb-20059019); a supplement I have been taking daily up to today and may be part of the problem I have been having in maintaining the appropriate INR (International Normalized Ratio) blood level (between 2 and 3 with 2.5 most appropriate). This, too, becomes a game of warfarin daily dosage to remain in this blood level. Anyone reading this who are prescribed warfarin for any reason, but in this case when prescribed Zytiga or Xtandi, please read AND HEED.

5/24/2017 – GOOD NEWS! It appears switch from Zytiga/abiraterone (after effective 5 years, 8 months but diminishing more recently) to Xtandi/enzalutamide, along with stopping Metformin that didn’t appear effective as long as expected, has had a good effect; Latest PSA 0.826ng/ml – a drop from 0.949ng/ml.

7/10/2017 PSA 0.940ng/ml – so back to an elevation I was hoping would be going the other way after stopping Zytiga/abiraterone and starting Xtandi/enzalutamide. My Testosterone (T) level continues at <3.0 so it doesn’t appear stopping abiraterone (the purpose to shut down all testosterone production) made any difference unless T production within cancer cells can still occur. Will have to wait a few more months and see if we are back to a continuing trend of PSA rise.

08/22/17 PSA 0.941ng/ml - With recent move from Zytiga to Xtandi/enzalutamide, we shall pray that Xtandi maintains this very slow elevation in PSA, keeps it stable, or even bring it down. November will be 25 years since diagnosis, December 16th 25 years since open surgical removal, April 25 years since salvation radiation. All since 1996 recurrence has been on/off ADT and appropriate ADT medications to maintain control and management.

10/5/17 OOPS! PSA JUMP FROM 0.941NG/MLTO 1.15NG/ML! Not sure if because I was devouring sweets recently, but sugar certainly does not go well with cancer cell control. Scheduled for another ultrasensitive PSA check in November so will be extra careful with sugar intake and see if that makes any difference. Probably unlikely, so also have an appointment scheduled in November with my Medical Oncologist Dr. Bassam Mattar of the Cancer Center of Kansas/CCK wherein we will have to discuss options should the PSA keep elevating; getting too close to the 2.0ng/ml I have always set as the maximum wherein something new has to be done. Options: Trip to the University of Kansas Medical Center for their C-11 Sodium Acetate PET/CT imaging to see if that is sensitive enough to identify low tumor development location; other imaging fails to do so – if location determined, targeted radiation; Provenge; check Circulating Tumor Cell activity to see if present in blood stream (not so in past check); Cabazitaxel; Chemotherapy w/Docetaxel.

10/12/17 Stopping Xtandi and returning to Zytiga accompanied by Dexamethasone and continuing Lupron and Avodart this date to see if there may be an improvement in PSA activity compared to the earlier change from Zytiga to Xtandi that has shown no improvement.

10/13/17 – New research information found this date indicates that when enzalutamide/Xtandi appears to be having no effect on PSA control, the addition of Metformin with enzalutamide will inhibit the factors causing this problem and sensitize enzalutamide to again be effective in androgen deprivation therapy. With this new revelation, am stopping the one-day change from Xtandi to Zytiga and returning to Xtandi/enzalutamide while adding Metformin to my Lupron, Avodart, Xtandi androgen deprivation treatment to determine if this addition of Metformin will again bring PSA elevation down and under control.

11/13/17PSA 0.997ng/ml, thus a drop of 0.153ng/ml from 1.15ng/ml on 10/5/17 following adding Metformin 500mg one in morning, one in evening, Vitamin B12, and Turmeric to my more recent protocol of Xtandi/enzalutamide, Lupron, and Avodart that wasn’t showing much success after moving away from Zytiga/abiraterone acetate that had been losing effectiveness. This may support my recent revelation that Metformin can open pathways for Xtandi effectiveness otherwise blocked off. Added Turmeric/curcumin since there have been reports that this supplement can also provide some anti-cancer effect, so why not give it a try?

1/15/18 PSA 1.090ng/ml. Yup, a very slight rise (0.093ng/ml) from my previous 11/13/17 PSA result of 0.997ng/ml. But, of all dumb things on my part, I forgot to begin the Metformin 500mg one tablet twice daily I remarked in that 11/13/17 report when I refilled my 4-week medicine holders that had run out a few weeks ago! A “senior moment(?)” I should not be permitting to occur! So, not going to be overly concerned until a next ultra-sensitive PSA level check scheduled for 2/23/18 to see if the Metformin, now being taken daily, will make a difference by then.

2/23/2018 PSA 1.2ng/ml This does not bode well since it indicates that the switch from Zytiga to Xtandi, as well as the addition of Metformin to supposedly synthesize (increase the effect of) Xtandi, and as well as having added turmeric/Curcumin, is not having the effect of lowering PSA as had been anticipated. This PSA result indicates yet another elevation, 0.11ng/ml, above the previous 1/15/2018 level of 1.09ng/ml, that then was also an elevation of 0.093ng/ml over the previous PSA level 0.997ng/ml two months prior (0.203ng/ml rise over three months). These elevations are getting too close to the 2.0ng/ml I have always set as the time to determine the next course of action. Not sure where I go from here, but will discuss with Medical Oncologist at scheduled appointment 3/2/2018.

4/13/18 PSA 1.55ng/ml – So, despite a switch back to Zytiga/abiraterone acetate and addition back of Prednisone, PSA still on a slow but steady rise. Not sure if all the significant blood loss I experienced between 10:00 P.M. Friday 3/30/18 and 10:00 A.M. 4/1/18 (36 hours) and six bags of blood transfusions, along with an angiogram up through the heart and down into the intestines checking for reason for blood loss the morning of 4/1/18 (negative result so obviously ruptured diverticula) had any bearing on continued PSA elevation or not. With blood loss and despite blood transfusions, my Hgb, Hct, RBC, and WBC are all way below normal indicating I am experiencing anemia. 325mg Sulfate ferrous/Iron and 5000mcg Vitamin B12 added to my daily intake to hopefully get these levels back up into normal range. In any event, I guess we just keep plodding along and see how long it takes before rising to the 2.0ng/ml I will want to try something else. I see my MedOnc Dr. Mattar on 4/30, so we shall discuss then.

There are still several other protocols that can be prescribed should conditions warrant, so expect I can continue management and control of my continuing prostate cancer for, I hope, several more years. My Mother lived to 96. My Dad to 95. With my birth in 1932, I have several more years to shoot for and intend to do so.

I have written over 200 articles in advocacy/mentoring to be available for men and their caregivers that regard Prostate Cancer and the many issues involved in the treatment of this disease (see "Observations" on my website at http://www.theprostateadvocate.com) to support, educate, empower, and hopefully ease their concerns. I speak and volunteer at seminars, health fairs, and other groups, large and small and provide voluntary advocacy/counsel to patients and caregivers worldwide via the internet.

In association with a son who is Web Services Manager/Audio-Visual Tech for Squid Ink Creative (Graphic Design, Web Design, Video/Motion Graphics, and more http://www.squidinkcreative.com/) in Wichita, I provided the input material and my son provided the expertise to develop and program – and the computer company sponsor – a website, www.ustoowichita.org for the Wichita Chapter of Us TOO Intl., Inc., and again with my son to develop this personal website.
In the past I served on the Chapters Advisory Panel of Us TOO Intl., Inc., and on the Patient Advisory Council of the Prostate Cancer Research and Education Foundation (PAC-PCREF). I continue to serve as on-call counselor for the Wichita branch of the American Cancer Society and the Victory-in-the-Valley Cancer Patient Support organization on matters relating to Prostate Cancer. I was selected and participated as a Consumer Reviewer regarding Cell Biology in Reston, Virginia as part of the Prostate Cancer Research Program (PCRP) sponsored by the Department of Defense, United States Army Medical Research and Materiel Command, 2006 Congressionally Directed Medical Research Program (CDMRP). I was invited again in 2007 and served as a Consumer Reviewer-Mentor regarding Physical Imaging. I was also invited to participate in IMPaCT (Innovative Minds in Prostate Cancer Today) in September 2007 at a gathering in Atlanta of over 600 Prostate Cancer Research Scientists and 100 other Consumer Reviewers/PC survivors/Advocates. I was invited to attend the 2nd IMPaCT gathering in Orlando in March 2011 but unable to attend because of recovering from pulmonary embolism to both lungs simultaneously the previous December (now family won’t permit me to go anywhere!) .

PROSTATE CANCER MENTOR AWARDS

Us TOO Intl., Inc. “First Annual Edward C. Kaps Hope Award”
In June 2008 I was among six other advocate/leader members of Us TOO Intl., Inc. who had been nominated by their peers, then selected to receive the prestigious "First Annual Edward C. Kaps Hope Award" presented to (as quoted from the Us TOO website www.ustoo.org) "An Outstanding Leader in an Us TOO Support Group Who Has Shown Unselfish, Dedicated Service to Prostate Cancer Survivors and their Families." I am very humbled by nomination for this award from patients and caregivers to whom I have provided advocacy and counsel to ease their burden of concern. My thanks to all who took the time to nominate me.

Prostate Cancer Research Institute/PCRI “Harry Pinchot Award”
On August 27, 2012 I received a phone call from the CEO of the Prostate Cancer Research Institute (PCRI) that I was one of two men selected to receive the prestigious 2012 PCRI “Harry Pinchot Award” for my, as noted on the PCRI website www.pcri.org, “accomplishments and personal attributes that show excellence in prostate cancer education, research, advocacy, and community support” to be presented at the 2012 annual PCRI Conference on Prostate Cancer during a Gala Dinner event Saturday evening September 8, 2012 and PCRI would be arranging my transportation, hotel accommodations, and all expenses. Obviously I was surprised, thrilled, and humbled at the same time. My thanks for the nomination by Wichita Us TOO chapter member Judge Larry Hollis. My family relented regarding my traveling, and I attended the conference, received the award, had the opportunity to address the conference attendees (see http://tinyurl.com/8sb9too) and had the pleasure of meeting and talking with several patients and their caregivers with whom I had provided earlier mentoring. I encourage all patients and caregivers to save and plan ahead to attend one of these outstanding annual PCRI conferences on Prostate Cancer where outstanding presentations are provided by top physicians in the nation who have performed personal research and study and have become experts in understanding and treating our insidious men’s disease. Future PCRI conferences will be announced on their website www.pcri.org.

Certificate of Appreciation from Us TOO Intl., recognizing 20 Years membership
In January 2016 I received a 20 Year membership Certificate of Appreciation “For your dedicated efforts. You are an inspiration to others.”

Recognizing the quality of my mentoring to prostate cancer patients and their caregivers:

Likely the world’s foremost specialist specifically in research and treatment of Prostate Cancer, Medical Oncologist Stephen B. Strum, M. D., FACP, having come to recognize my several years also in research and study of our insidious men’s disease and as a patient mentor the recommendations I made to patients, made remarks such as the following on patient forums:

“I wish all MDs were as responsive as Chuck.” “Chuck represents what I call the CPR of what the medical profession should be all about, but rarely is. CPR (courtesy, professionalism, respect).” At another time to me he remarked: “since I regard you as one of the few brightly shining lights in the world of PC support….” In 2014 on a patient forum he remarked: “…. In my 31+ years of working with men with PC, I find a minority of men who truly comprehend the basic principles/concepts of this disease like Chuck.”

I am an active advocate for increasing extremely necessary Prostate Cancer research funding, awareness of the disease by all men, annual examinations, early detection, time for education and empowerment before beginning any treatment while appropriate additional testing is performed to determine where the cancer is located as well as obtaining biomarkers to evaluate along with the PSA level any other increasing levels or abnormalities, and only then early treatment, if necessary, as the result of educated choice for a hoped for cure. We would then pray for the advent of affordable cost of cancer medications that can inhibit or kill cancer cell growth and prolong life.
I encourage all who read this biography to follow the special words that are etched on the SEA blue wristbands worn by Us TOO members – "Support-Educate-Advocate."